Multiple Sclerosis in a downward, unpredictable spiral isn’t pretty. But then neither am I. And I guess I just have to live with both those facts. Hey ho.
MS isn’t always progressive. But it often is. It doesn’t always progress fast. But it sometimes does. There’s very little you can do to predict your ongoing progress. No wonder that feeds into the anxiety that frequently comes hand in hand with actual symptoms.
And right now I’m in the middle of a storm of change. Meh… Some posts inbound!
Daily carer visits
My latest significant ickiness to ‘give in’ to? Daily carer visits. Weekdays to put me to bed. Weekends to both haul me out of bed and then later to plonk me back in. On a good day I could manage all that alone. On a bad I’d have to be asking my wife or my children. And when I can avoid that I will. ‘Cos guilt. ‘Cos pride. ‘Cos I wanna save love and energy and laughter for them. Not sorting out catheters, meds and water, and hauling me unceremoniously into or out of bed.
It’s a hard kick in the teeth to adapt to, with no way of dictating what time they will turn up to plonk me away for the night. Earliest is a ghastly 5.50pm. I’m lucky if I get to a slightly less ghastly 7.30pm. That’s a depressing life change to get used to. There’s only so much Netflix and YouTube and loneliness a guy can take. I do try reading from time to time but my cog fog has me re-reading chapters. Or pages. Or sentences. Meh.
Every one of the carers is minimum ‘lovely’ up to ‘totally delightful’. Some of them even laugh at my bad jokes. I suspect they might be paid extra for that.
But it won’t surprise you to know that there’s a significant staff turnover. I dunno what they are paid but I guess it’s low. Even with the ‘humour Mark’s humour’ bonus. So I’m constantly welcoming new strangers into my home, my bedroom, my bathroom. It was weird at first, but you get used to it. ‘Only my wife sees that’ has long gone out the window.
And with me disappearing early evening, I’m deprived some of my best family time. 16yo is fine being off doing the usual 16yo stuff. But my 11yo, I miss that extra evening nonsensing. And with Mrs W. working long hours, we are ships passing in the night. Or at the coffee machine in the morning.
This year the family took a holiday without me for the first time. And attended a music festival, also without me.
I get why. They need a break from me from time to time now. To do normal stuff. Without all the faffage that comes with looking after a very disabled person. Still bloody hurts though. I do hope I’m allowed back into the holiday/festival fold soon. It hurt! Maybe we take a carer?